Transcript ILEP workshop note of group 1

ILEP STRATEGY
WORKSHOP
Wurzburg, Germany
GROUP 1 - OUTCOME OF DISCUSSIONS
1.
ILEP STRATEGY AND INDICATORS
1. How to make ILEP strategy and
indicators work?

General – indicators shold be suited to follow progress in
implementation

We need to make sure that our indicators is as close as
possible to the WHO indicators: So our main partner – the
goverment is not too confuse with so many indicators
1. How to make ILEP strategy and
indicators work?

How the information will be collected?
1.
If it is not part of the routine, how to influence government to take these indicators into their
programme?
2.
The chance to collect this via other stakeholders we are working with: DPOs, NGOs and other
INGOs we are collaborating with
3.
Producing shadow report – so we do not need to rely on government reporting system. We
make our own reporting system
4.
For each, we need to choose 3 indicators only – too much at the moment
Not adding new data collections – these seems to be new to our data strategy. Need to add
new information only.
Note on: Break Barrier to Inclusion

Not clear where we are heading to

Participation of Women and Men affected by Leprosy (very passive)
First we start with passive then we move forwards to be more active
Important to include an indicator where we can measure that livelihood is
changing

Can we have indicators with target quantity which we can measure?
This is a global indicator which need to be translated to at country level.
2.
GOOD QUALITY NATIONAL REPORT AND
DATA
2. Improving quality of the report and data

Challenge: What’s in it for me? (for government – the incentive)
More accurate: more money (for donor/ INGO, but not for government)

Challenge: WHO is merging the reporting of leprosy into NTDs
STRATEGY: Data sharing between different NTDs
2. Improving quality of the report and data
STRATEGY: Ownership of the strategy by government
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Looking for drivers of change

Knowledge management

As tool for LEARNING, not criticsm – Focus on the STRENGTHs, more encouraging
STRATEGY: Lobby and influencing government

Legal agency – the supreme court: reported cases on abuse of rights of people
affected by leprosy
2. Improving quality of the report and data
Vision and goals can be the same: WHO/government/ILEP
STRATEGY: We need to look beyond the WHO

UNICEF is better agency – for children

MDGs – engage in the global forum
STRATEGY: Meaningful collaboration of ILEP with Nippon Foundation and SMHF
2. Improving quality of the report and data
STRATEGY: Continue our Social mobilization task
What is the shape of our partnership?

Cross-vertilization partnership

Where women and men affected by leprosy will advocate for issues and
to include agenda of improving the leprosy situation in the country

How we can get data of children, women and men affected by leprosy
who have been cured, but still living with consequences of leprosy and
their family members
3.
THE MISSING MILLIONS
3. How to bring these millions onboard
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NO to class division: PLTs vs PLUs – Leprosy is still them vs. us

Reintroduce the active searching strategy which look beyond the role of HC
worker, especially engagement of women and men affected by leprosy in
screening

Social and behavioural changing’s communication strategy – active health
seeking behaviour (in term of normal population setting: not remote area, difficult
to reach area)

Inserting leprosy into existing programme: e.g. village health and Nutrition day,
and into women specific health programme
3. How to bring these millions onboard

Mapping and focusing on certain pockets:
1.
Need to verify that certain area is really low or high endemic
2.
Low endemic strategy vs. high endemic strategy (also to include specifically: In conflict areas)

Getting more players and stakeholders into this issue: tapping into collaboration with
companies, charity organisations, and religious based organisations existing in the
country (add by other group: media) – (plus embassies?)

Continue with our training efforts: new ways of training (regional based, etc.), and
making it a part of a holistic plan.

Seperate organisation of women affected by leprosy is needed
4.
AWARENESS
4. Increasing community awareness &
maintaining the level of awareness and
commitment of health workers

Inclusion and empowerment of men, women and children affected by leprosy
because their involvement is very powerful:
- Example of SARI project: participatory video making, participatory comic making

Exploring the strategy of engaging men, women, children affected by leprosy who
have disability

There is tendency of competing ‘tragedy’ which is counter productive when it comes
to positive image building

We need to realize the contextual aspect
4. Increasing community awareness &
maintaining the level of awareness and
commitment of health workers

Need input from social science specialist – it has been medical driven

Lobby and advocacy beyond the existing medical partnership

Measuring awareness level at community

Assessment of stigma level according to reality: does it exist or it doesn’t

Term discrimination is too light. It is CRIMINILIZATION!!

Focus on HARMFUL belief and don’t tackle the non-harmful believe
4. Increasing community awareness &
maintaining the level of awareness and
commitment of health workers

Target: Young generation (stigmatiation is not yet rooted deeply)
E.g. Group of univ. students – working camp!

STRATEGY: OK to use the image of men, women and children affected by leprosy
including those with deformity if it shows how they are empowered!

Combine the old fashion awareness raising method with the new tech inovations.

Dissemination of best practices: ILEP needs to help distribute/ facilitate exchange of
IEL & awareness raising materials, so biggest possible number of organisations/ ILEP
members can see example of successful material/ campaigns and copy/ adapt/
learn from these existing materials
5.
CONTACT MANAGEMENT &
CEMOPROPHYLAXIS
5. Contact Management & Cemoprophylaxis

Baseline: How many countries have adopted this as part of their routine
programme? Is there a policy on contact management?

If it is part of the routine programme, why some new cases with deformity still
found?

Recording in the patient card

Make it as indicator – as part of reporting system

Can we invest in the strengthening the organisation of people affected by
leprosy?
5. Contact Management & Cemoprophylaxis

Household members involvement in screening can be more effective
(sensitivity to screen each other skin)

One time contact tracing vs. Repeated contact tracing

Expanding in term of time vs. scope
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Combined contact screening with cemoprophylaxis
6.
PREVENTION OF DISABILITY
6. PoD – actions @diagnosis & after MDT plus
addressing unmet need

Assessment of number of children, men and women affected by leprosy with
degree of residual impairment on regular basis

In the national programme: No review and evaluation focus on residual impairment
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Consultative wih children, men and women with residual impairment and empower
them to voice out for themselves

To use “Exclusion” as cross-cutting aspect when we look at residual impairment

Quantitative research is needed with specific focus on this group of PwDs

Static data is available per-year basis for G2 disability from the number of new
cases. But G1 disability without good wound care can develop further disability
6. PoD – actions @diagnosis & after MDT plus
addressing unmet need

To lobby for integration of “Care after Cure” rather than just: “Prevention of
Disabilities”

Inter-sectoral approach and engage all stakeholders of multi GOs and disability
NGOs and INGOs

ILEP need to use the policy formulation process

Stigmatization; not social only, programme stigmatization exist. Need to focus on
rights-based approach
7.
BREAKING BARRIERS TO INCLUSION
7. Breaking barriers to Inclusion
STRATEGY: Right-based approach is definitely the way forward

Investment should focus on empowerment & development on institutional level not on
personal level

Putting money/ charity based approach for engagement of children, men and women
affected by leprosy might ‘spoil’ the empowerment spirit
Need for a feasibility study at country level
STRATEGY: Sensitization is needed, also for us ILEP members

NO to client/ beneficiaries/ target group but partner/ main stakeholder/ rights holder

NO ‘making use’/ ‘using’ of people affected by leprosy, but engaging
KEY: Men, women and children affected by leprosy should determine their role and activities
where they will be involved
STRATEGY: A seperate group for women affected by leprosy
8.
WORKING WITH PARTNERS
8. Working with partners

STRATEGY: Standardizing partnership at country level – ILEP to set up the standard of the
collaboration (intra ILEP partnership). Will be great if ILEP also set standard for governance
aspect

For external partnership, the good practice is if it is build collectively and not based on individual
organisation. This can minimize the risk of inconsistence communication from different member
of ILEP in the country to the government

Need to assess partnership model at each level: national, provincial, etc.

Collective partnering in fundraising need to be explored

Collaboration with government needing lots of energy to ensure the level of healthy partnership
and not fall into being seen as ‘service provider’ to government’s needs.

We need to map out potential NTDs partners and find out where is the ‘easy win’ for partnership

For some of us, we are often seen as donor organisation, so expectation of partnership is heavy
towards financial gain which make it difficult to enter into a more healthy model of partnership
9.
URBAN LEPROSY CONTROL
9. Urban leprosy control
STRATEGY: To prepare different strategies for urban setting, even if it is for long
term result

Major problem: no follow-up because of limitted human resources
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No links between health agencies at urban setting
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Migration including inter-city migration
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Should be integrated with other health programme
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The role of private sector is much larger than in rural area
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A lot more mainstream NGOs working in urban setting
9. Urban leprosy control

Need to assess opportunities which urban setting has.

In some urban setting mobile phone coverage is good, but we need to
see if there are human resources to follow up on treatment and
medication
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Sustaining self-care group is more difficult in urban area
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CBR opportunities

Identification of dispensaries, but issue is still follow up

Peer-support within community or household
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Create strategy based on each context
10.
ILEP TECHNICAL & COLLABORATION NETWORK
10. Technical &
Collaboration
network
ILEP GCTF –
ITC
COMMUNICATION
FLOW for ILEP
KNOWLEDGE
MANAGEMENT
Global
Coordination
and Technical
Facilitator
National ILEP
Coordinator
Role of ILEP GCTF
Communication and Coordination:

Facilitate knowledge exchange

Should network through the country coordinator. Can not represent ILEP at
country level

Promoting exchange of good practices
MEMBERS OF GROUP 1
Members of group 1

Ashim Chowla – Chief Excutive LEPRA SOCIETY, www.leprasociety.org, email:
[email protected]) – mob: +91-9963972223

Dr. Michael Chen – Secretary General HANDA Rehabilitation & Welfare Association,
http://weibo.com/1793396213 (@HANDA-Michael), email: [email protected] – mob: +86-13808881221

Dr. Eva-Maria Schwienhorst DTMPH, cand. MSCIH – Medical Advisor GLRA,
www.dahw.de, email: [email protected] - ph. +49-9317948110

Vivian Velema-Andyka – Country Representative NLR Indonesia,
www.leprastichting.org, email: [email protected] – mob: +6281298984177

Dr. G. Rajan Babu – ILEP Technical Commission member, email: [email protected]
– mob. +91-890321179
Members of group 1

Duane Hinders – Country Representative NLR Brazil, www.leprastichting.org,
email: [email protected] – mob. +55-8599846961

Dr. M. A. Arif – Country Representative NLR India, www.leprastichting.org,
email: [email protected] – ph. +91-1126898467/ 1126898471

Wim van Brakel, MD MSc PhD - Head Technical Department NLR,
www.leprastichting.org, email: [email protected]

Gerrit de Vries - Head of Programmes NLR, www.leprastichting.org, email:
[email protected]

Hiroe Soyagami – Sasakawa Memorial Health Foundation, email:
[email protected]
Thank you
NOTE BY: VIVIAN